Motor Neurone Disease

HL Deb 01 May 2003 vol 647 cc918-38

7.44 p.m.

Baroness Noakes rose to ask Her Majesty's Government whether the services available to patients with motor neurone disease are adequate.

The noble Baroness said: My Lords, my Question asks the Government whether services to patients with motor neurone disease are adequate. I shall lay my cards on the table now and say that I should be astonished if the Minister could say that those services are adequate; I hope to be told how and when they will improve.

I declare that I am associated with the All-Party Parliamentary Group on Motor Neurone Disease as its treasurer. I place on record my appreciation for the briefings that I have received from the Motor Neurone Association. However, I stress that the initiative for bringing the debate before your Lordships' House is entirely my own.

Motor neurone disease is not especially common. At any one time, about 5,000 people are suffering from it; it has an incidence rate of about one in 50,000. It is therefore likely that many people will never be touched directly or indirectly by the disease, but those whose lives have been touched by it are profoundly affected. Last week, I visited my local branch of the Motor Neurone Disease Association in Kent. It was full of people from all walks of life who had suffered the loss of a partner or parent but who were united in their determination to raise funds to fight this dreadful disease.

I am fortunate in not having a loss within my family, but I clearly recall the first time motor neurone disease came onto my radar screen. It was about 20 years ago when I was working alongside a remarkable man called Sir Ian Trethowan. He had been a distinguished director-general of the BBC and, in semi-retirement, he was chairman of the Horserace Betting Levy Board, which combined his considerable charm and diplomatic skills with his love of horse racing—a love that we shared.

He was an inspirational man in many ways. But one day motor neurone disease struck him. Within a matter of months he was in a wheelchair, and a few months after that he was dead. I still recall the shock of seeing the rapidity and violence with which the disease attacked him. We should be in no doubt that it is a vicious disease.

Motor neurone disease is a progressive and fatal disease that affects the nervous system. It attacks the nerve cells, or motor neurones, which send messages from the brain to the muscles. As those motor neurones gradually die, the muscles stop working. Eventually, patients cannot walk, talk or feed themselves. It is a particularly cruel disease because the minds and senses of victims are not affected. They feel pain. They know what is happening to their bodies but they also know that there is nothing they can do about it. Once they know that they have got motor neurone disease they also know that their remaining life is short. Half of MND sufferers live only 14 months after diagnosis and that life is full of difficulties.

I want to speak about several different aspects of services for MND patients and I shall start with diagnosis. As I mentioned, life expectancy, after diagnosis, is short, but the average time to diagnosis is 17 months. That means that opportunities can be lost to maximise the quality and extent of remaining life. There is evidence that the earlier treatment is commenced, the greater the impact it has, both physiologically and psychologically.

So what are the barriers to early diagnosis? The first barrier is general practitioner knowledge. General practitioners must have the knowledge and skills to identify the early signs of motor neurone disease so that they can make the correct referrals. The Motor Neurone Disease Association found that more than half of people with MND were initially referred to fields other than neurology before obtaining a diagnosis. That contributes to the delay. I am aware that it is a very difficult area because the average GP may see only one motor neurone disease sufferer in his whole career. But the disease is one of a group of serious neurological conditions to which GPs must he alert.

Once a GP decides that his patient should be referred to a neurologist, the next barrier is a shortage of neurological specialists. In this country, we have only six neurologists per million of the population. We fall far behind our European counterparts. Germany has double the figure at 12 per million; the Netherlands has 33 per million; and Italy has 71 per million. We do not compare well.

My questions to the Minister are whether the Government are satisfied with the neurological content of GP training and with the numbers of specialist neurologists. If not—and I hope that the Minister will not say that the Government are satisfied—what practical steps are being taken?

OK, that is the hurdle of diagnosis out of the way. The next problem that an MND patient will face is ongoing service provision. It is hugely complex because of the many different services needed. A patient needs help from a wide range of health and social care professionals, such as occupational therapists, physiotherapists, pharmacists, social care workers and specialist doctors and nurses. There are two important points in that respect. First, the services must be co-ordinated across the organisational boundaries of health, housing, social care and benefits systems. Secondly, the services must be timely.

MND patients never become expert patients because their disease progresses so rapidly that it always overtakes the learning that they have made. Someone must organise their care for them to ensure that the right interventions are made and the right support is available. A recent survey showed that only 55 per cent of people with MND are linked with a specialist MND team after diagnosis—that is, nearly half of all patients lose out. I cannot stress enough the timeliness point. There are many instances, for example, of specialised equipment arriving after a patient has lost the ability to use it or even after his death.

Last summer, the All-Party Parliamentary Group on Motor Neurone Disease heard first hand from a brave man called Andy Fairbrother about the difficulties that he had experienced. Andy lost his job and his wife after he was diagnosed as having motor neurone disease. He had to move into a specially adapted flat but failed on several attempts to get a disabled facilities grant to furnish the flat. As a consequence, his flat lacked basics such as carpets and a washing machine. He had difficulty obtaining disability living allowance. He was constantly told that funding prevented him from getting adequate professional and carer support. He felt that the stress of coping with those difficulties accelerated the progression of the disease. Andy died last autumn.

Does the Minister agree with me that much remains to be done to ensure that MND patients receive integrated and co-ordinated services to match their needs and the progression of the disease—above all, on a timely basis? What do the Government plan to do to ensure that the basic need for co-ordinated and timely services will be universally met?

Some clinical interventions have a transforming effect on MND patients' lives. Given the low life expectancy of diagnosed MND patients, the extra few months that the drug Riluzole provides, now that NICE has recommended its use, are very welcome. But some clinical interventions are not so widely available. The loss of muscle power leads many MND sufferers to experience difficulty in swallowing and chewing. In turn, that leads to malnutrition. There are techniques of percutaneous endoscopic gastrostomy or radiologically inserted gastrostomy that can transform the nutritional intake of patients.

Another effect of the loss of muscle power is an inability to maintain sufficient oxygen intake. That results in sleep disturbance at night, followed by fatigue and/or headaches during the day. There is a remedy in the form of non-invasive positive pressure ventilation—NIPPY—that supports breathing at night. It allows oxygen intake, so that, for the MND sufferer, the following day is largely free of headaches and fatigue.

Nutritional support and respiratory support have dramatic effects on the quality of life and can extend survival, but they are not available uniformly. In fact, only about 5 per cent of MND sufferers have access to NIPPY respiratory support. Does the Minister agree that all patients with MND should be offered those interventions at the appropriate time? How will the Government ensure that it can be done?

All MND patients need carers and become increasingly dependent on them as the disease progresses. Much of the burden of coping with the complex needs of MND patients falls on informal carers who themselves need to be supported. There are many difficulties with the availability of respite care. A survey by the Motor Neurone Disease Association showed that nearly 75 per cent of carers had not even been offered respite care. I know that the Government have a national carers strategy, but it has not had much impact on MND patients and their carers. The carers strategy was long on promises, but they were not bankable by carers. Funding shortages are usually given as the reason for the unavailability of those services. Will the Government commit to achieving real improvements for the carers of MN D patients and ensuring that the funding exists?

I expect to hear from the Minister about the proposed national service framework for long-term conditions. She may even suggest that all the problems will be solved by it. The first thing to mention about the framework is the length of time that it is taking. It was first announced in February 2001, and it took about 20 months to get to the stage of setting up an external reference group. Even when it is finished, it may take until around 2005 to start implementation and, perhaps, another 10 years to implement. I am sure that I need not remind the Minister that those timescales are beyond the lifespan and, hence, the comprehension of MND sufferers. I hope that she will not say that there will be no improvement in services to patients or carers until we have seen the outcome of the national service framework.

Apart from the timing of the framework, there are concerns about whether the NSF, when it appears, will offer sufficient hope for MND patients. The working groups have a wide remit, and it could be easy for the relatively small numbers of MND patients to be sidelined. Their needs derive particularly from a rapidity of progression that is not characteristic of other neurological conditions. There is a fear that MND will be submerged below the generic needs of people with other conditions.

There is also a specific concern about the Government's statement that the NSF will focus on people of working age. The onset of MND usually affects people over 55, and, whatever the age of onset, MND sufferers find that they have to cease work after a while. Will the Minister confirm that the needs of all MND sufferers, which are fundamentally about the quality of their remaining short life rather than the ability to work, will be covered by the NSF?

I could have covered other issues in this debate such as the need for research and the way in which the benefit system works. I could even haveo referred to the territory covered by the assisted dying Bill promoted by the noble Lord, Lord Joffe, which will have its Second Reading in about a month. However, I hope that I have conveyed something of the seriousness of the issue facing motor neurone disease sufferers. I look forward to the debate and to the Minister's response.

8 p.m.

Lord MacKenzie of Culkein

My Lords, we should be most grateful to the noble Baroness, Lady Noakes, for tabling this Unstarred Question on this most important matter. If I repeat some of what she said, I hope that it will be to give greater emphasis to it. I should perhaps declare some interests. First, I have a very close personal friend who has motor neurone disease. Secondly, I, too, am associated with the All-Parliamentary Group on Motor Neurone Disease. Thirdly, as a nurse, I have a continuing interest in these matters. I have spoken from these Benches before in support of stem cell research, which may open up the possibility for treatment for at least some of these neurological conditions.

The concept of a national service framework on long-term conditions is much to be welcomed. However, like the noble Baroness, Lady Noakes, I think that it is taking an inordinately long time. One may ask, too, why motor neurone disease should be singled out from other neurological diseases or indeed from other long-term conditions in relation to the national service framework. In my view, it can quite clearly be justified by the rapid progression of the condition, which has been graphically spelled out by the noble Baroness, Lady Noakes, and the fact that even where services are reasonably good, help in the form of support and/or equipment all too often arrives after the disease has progressed beyond the point when it is of little or no practical use.

Quite frankly, that is not an acceptable state of affairs in any developed country. It cannot just be left to the Motor Neurone Disease Association—which does a magnificent job and to which I pay tribute—to push at the doors of government. I hope that when my noble friend the Minister replies to the Question, she will be able to tell us that we are pushing at open doors.

I do not suggest for one moment that diagnosis is easy. Motor neurone disease presents with early signs and symptoms which can lead in a number of directions. But should it take an average of 17 months to confirm diagnosis? In the case of my friend, the initial referral was to orthopaedics; it was thought to be a problem with his knee. That led eventually, after some time, to major spinal surgery for what was thought to be trapped nerves. When recovery was not apparent thereafter, further spinal surgery was decided upon. That was in prospect for some time, until one of the several doctors who saw him decided to have tests carried out which ultimately confirmed the diagnosis of motor neurone disease.

I wonder why the appropriate tests cannot be carried out much earlier in pursuing differential diagnosis so as to exclude the possibility of motor neurone disease. If it does prove to be motor neurone disease, it is well known that the earlier the treatment commences the greater the benefit of that treatment. However, it confirms my view that the Motor Neurone Disease Association is absolutely right in demanding that the national service framework on long-term conditions should contain—I say that it must contain—a specific target to the effect that the average time to diagnosis for those with motor neurone disease should, by 2015, be nine months from the first symptom. On the face of it, that does not appear to be an unreasonable objective. I hope, therefore, that my noble friend the Minister will be able to say something positive about that this evening.

I, too, want to address the issue of the number of neurologists in this country. I know that this is not the only field in which there is a shortage of doctors. We can all spend a lot of time spelling out the per capita differences in the very many specialties here compared with other developed countries. However, it is quite difficult to explain how there can be twice as many neurologists per head in Germany, six times as many in Holland, 12 times as many in Italy and something like 16 times as many in Denmark. I think that if the proverbial Martian landed, he would find it extremely strange.

I accept that some splendid work is carried out here, notably the research in Professor Leigh's unit at King's College Hospital, but we need a great many more Professor Leighs. Will my noble friend the Minister say what steps are being taken to increase the number of neurologists in this country?

It is clear from my own observations as well as from the briefing from the Motor Neurone Disease Association that there is quite rightly considerable concern about the difficulties faced by informal carers. They face a hugely demanding situation, which is exacerbated if the NHS and/or social services do not come up to scratch. I can see how demanding it is in the particular situation of my friend where support is possibly as good as or better than most.

It is right to give credit where it is due. All too often it is easy to knock services rather than to give praise. The multidisciplinary neurological team from the Merton and Sutton Primary Care NHS Trust do a really good job, as do social services in the London borough of Sutton. Tribute needs also to be paid to the St Raphael's Hospice in Cheam for the access to, and quality of, its respite care and to the Winged Fellowship, with which my noble friend Lord Murray of Epping Forest is very closely involved.

But we know that that support is not available everywhere. There are budgetary constraints and, most disappointing, resistance to giving respite and palliative care to people with motor neurone disease. Even where one can afford private respite care, one hears of nursing homes that will promise to provide total care until they find out that motor neurone disease is involved. Suddenly they have no beds and calls are not returned. And not all hospices are able to give respite or palliative care to those suffering from motor neurone disease as their focus is on malignancies, or if they do, they may be down to one bed only. I hope that the Minister can say whether all primary care NHS trusts have multidisciplinary neurological teams. If not, will consideration be given to taking that very important concept forward?

I turn to the issue of palliative care generally and the role of the hospice movement. Hospices are one of the great developments of the past 20 or more years. There would be a huge problem for the NHS if they did not exist. I do not, of course, quarrel with the voluntary concept; it is to be greatly valued. But is the voluntary concept enough on its own? Is NHS support for hospices enough? I do not think that it is. I am given to understand that the hospice to which I referred a few moments ago is considering the ending of its nurse bank due to shortage of available funds. If that happens, fewer patients will be admitted to that hospice. I know of other hospices where the number of beds available has been reduced through funding shortfalls. Here, too, I look to my noble friend the Minister to give some word of comfort about increasing NHS funding support to the hospice movement. In my view there needs to be a sustained increase.

A great deal needs to be done if we are to give the highest quality co-ordinated care to people with motor neurone disease and the best possible support to informal carers. The national service framework must take account of the special issues raised by motor neurone disease and there must be acceptable minimum standards of care which, with all appropriate interventions, should be available in all parts of the country.

I hope that this short debate this evening will contribute to that. I look forward to the contributions of other speakers and, of course, to the response of my noble friend the Minister. I again extend my warmest thanks to the noble Baroness, Lady Noakes, for tabling the Question.

8.8 p.m.

Baroness Finlay of Liandaff

My Lords, I am most grateful to the noble Baroness, Lady Noakes, for tabling the Question about the services available to patients with motor neurone disease. I must declare an interest as I am also a member of the all-party parliamentary group. As a hospice doctor I have been privileged to provide care for some of these patients who have been truly inspirational in the way that they have faced their disease.

Sadly, I have to speak about services that are not available or, if available, are so delayed that by the time patients access the service they need the disease has progressed. Indeed, it may be more cruel to say, "We shall do an assessment and get back to you" than to say honestly, "It will take nine months before the modifications you need are carried out to your house". Expectations are raised, lives are put on hold and hopes are dashed as the needed services do not materialise. I wish I could say that I was exaggerating but I cannot.

The guidelines on the management of motor neurone disease prepared by the Exerpta Medica Motor Neurone Disease Advisory Group and endorsed by the Association of British Neurologists are excellent, but far too often they are not met. Making the diagnosis is difficult, as has already been pointed out, and a high level of suspicion requires knowledge.

Diagnosis is not easy. There is no single test either to prove or disprove that a patient has motor neurone disease. That is why expert neurological assessment is needed. Yet there is often a delay in diagnosis of around nine months. The noble Baroness, Lady Noakes, reminded us that the average survival from diagnosis is 14 months. Dr David Oliver, in his research on patients' experience, also found that 88 per cent of those dying at home and 93 per cent dying in a hospice had swallowing problems, while over four in five experienced breathing problems. Around three-quarters suffer pain, while a similar percentage experience problems with speech. However, the onset of such symptoms can be delayed by the introduction of the drug Riluzole once the diagnosis has been made.

There are not enough neurologists to meet the diagnostic burden in neurology. This national shortage, so eloquently explained by the noble Baroness, Lady Noakes, and which my noble friend Lord Walton of Detchant has also described to the House on several occasions, means that neurologists are simply not available to meet the educational needs of general practitioners and others. Better informed GPs speed up the diagnostic process.

The guidelines to which I have referred state that the diagnosis should be communicated in privacy, with the patient accompanied and given immediate support, with written information and regular feedback. But a busy neurology clinic dealing with around seven new patients and 12 follow-ups in a morning, means that that does not always happen. The standard time allocated to a new patient is half an hour, but I am assured by the professor of neurology at my own university that it is not possible to give the diagnosis properly in anything less than an hour.

The Motor Neurone Disease Association has created specialist nurse posts and centres for care and research, but they are not available everywhere. In parts of Wales, the district general hospitals have no visiting neurology service, no local Motor Neurone Disease Association service and no multi-professional specialist palliative care team. In 2000, only 17 per cent of specialist palliative care units were involved in the care of motor neurone disease patients at the time of diagnosis, yet these patients are already terminally ill when they are diagnosed. Even in the last stages, only 48 per cent of specialist palliative care units are involved in providing care. I am a hospice doctor and I find that lamentable.

All should be providing links with neurology services from diagnosis, but lack of resources means rationing of services, with the result that patients in need are often left outside the services which, due to the history of hospice development, are more freely available to cancer patients. As the noble Lord, Lord MacKenzie of Culkein, remarked, there are huge financial pressures on hospices.

Patients with motor neurone disease need speech and language therapy to help with communication and swallowing. They need physiotherapy for mobility and occupational therapy—with workmen available to adapt the home with aids and appliances such as POSSUM devices to help maintain independence and autonomy.

When breathing becomes difficult, intermittent positive pressure ventilation, especially at night, must be considered. Some 95 per cent of carers have reported it as being of great benefit. However, ventilatory support is not available in many parts of the country. In a survey conducted in 2001 of the 376 British consultant neurologists, the majority had not referred any patients for non-invasive ventilation during the preceding year. Only 234 patients had been referred—from a patient population of 1,990 new patients and 2,280 patients under follow-up review. The team from the University of Newcastle which collected this data estimated that under 3.5 per cent of all those with motor neurone disease were receiving ventilatory support. Contrast that with the data I cited earlier: over 80 per cent suffer breathing problems when dying.

Patients are terrified of choking to death, a reason often cited when the desire for early death by euthanasia is discussed. Of course it would be terrifying to choke to death, but the data from a study by Neuder and Oliver of patients in Germany and the UK showed that the vast majority—in Germany 88 per cent, and in the UK 98 per cent—of motor neurone disease patients, died peacefully and no patient choked to death". So why do so many patients with motor neurone disease feel such fear and despair? I suggest that the patients become seriously demoralised and cannot access the expertise that they need. They experience delays in getting good control of symptoms of pain, excessive salivation and drooling, muscle cramps, spasticity, respiratory symptoms, communication difficulty, and a possible feeding gastrostomy to maintain nutrition. Their family does not get the training in lifting and handling. They do not get the home modifications quickly, and the equipment within days of needing it. The patients do not have time on their side.

In a study of those motor neurone disease patients who would consider assisted suicide, there were significantly more patients fearful of the future—many fewer were able to say that they had hope or faith in the future and in the support that they and their family needed—than those who felt that they would not want recourse to such action.

No patient who needs assistance with mobility should be denied physiotherapy or appliances. Those staff in the community who do not have the resources at hand to provide good care become rapidly demoralised. Patients endlessly waiting become demoralised and denied precious days or weeks of living. Families and carers become worn down and despair, and the experience remains in the memories of those who live on.

Motor neurone disease is a horrible condition. The tenor of care must be rapidly responsive, sensitive to patients' needs and flexible to their situation. The patients have much living to do in the short time left, and it is cost-effective for the healthcare services to enable them to do that. Expensive modifications are more cost-effective if useful for months or even years, rather than lagging behind a patient's needs. Patients fear putting in a complaint, as they are dependent on the staff for their present and future care, so shortfalls often go sadly unrecorded.

In the standards to be set for the care of patients with neurological disease, rapid response targets would not go amiss, but I hope that the Minister will recognise that they must be resourced.

8.18 p.m.

Baroness Oppenheim-Barnes

My Lords, I too am extremely grateful to my noble friend Lady Noakes for tabling this urgent Question. She does so all the more creditably because of the Front Bench workload that she already has. I know that she spares no time when it comes to the affairs of the Motor Neurone Disease Association, and I thank her for that as well.

Motor neurone is the most cruel and relentless disease of all. I do not think that anyone who has spoken tonight would argue with that. Like my noble friend, I have not had anyone affected in my family and knew nothing of the disease until the son of some very dear friends was stricken. I was asked to become president of the Gloucester MNDA and served in that capacity for a number of years. I spoke to neurologists and saw a number of cases. I was struck by the difference in expectations in the various cases. Even within a very short period, the differences were very notable.

Equally notable was the support given by the local MNDA to the families and carers. It created an atmosphere in the circle of people who were desperate to know what to do. I certainly do not support any form of assisted death, but I can understand why internationally a significant number of motor neurone sufferers have sought it.

I believe that one problem we face—this is why the situation has occurred in the health service—is that, apart from anything else, there is so little international awareness among the public about the disease, not helped by the fact that it is called by an entirely different name in the United States.

I also want to thank the MNDA, in particular, for its briefing and for the presentation of the case that it sets out. I believe that it commends itself by the fact that every speaker thus far has quoted from it in great detail. I believe that if the Minister did not already know about the horrors, the difficulties and the multiple complexities of dealing with these problems, she will do as a result of this debate. I know that she has always responded in your Lordships' House with intelligence and, wherever possible, with a background knowledge, and I am sure that she herself is now more aware of the problems and of the humanity needed when dealing with such cases.

It is all very well to say that a hospital allows only half an hour to discuss a case. But by the time the people who make the diagnoses tell patients that they have this terrible disease, the patients know about the disease and the prognosis. Surely, humanity dictates that that information would not be passed on to someone who was not at least with relatives or friends at such a time. Training for such circumstances does not cost anything.

Of course, the shortage of neurologists is the problem. I do not expect the Minister suddenly to produce hundreds of neurologists out of her pocket. But I make the point that GPs and hospital doctors who deal with such matters and who are perhaps unable to make quick diagnoses can at least receive more training than they do at present in arriving at diagnoses. That obviously lies at the heart of the problem. One hopes that, as time goes on, i t will become easier to make the diagnoses, just as, with time, a drug has been discovered which will lengthen sufferers' lives and make them more agreeable than they would otherwise have been. A reference has also been made to stem cell research. Sufferers of the disease should always be given hope because, for some, eventually there will be hope.

I trust that the Minister will now consider the structure within the health service for dealing with this problem. It is not only a matter of targets; action is required to make a difference in every area. We are not talking about an enormous number of patients. Admittedly, those affected are spread diversely across the country. Eventually I would like to see regional motor neurone clinics, obviously supported and advised by the MNDA. I do not see why they should not be available and why the resources should not be found for them. Therefore, I hope that when the Minister comes to reply she will give us and the sufferers of motor neurone disease some of the hope that I believe they deserve.

8.24 p.m.

Baroness Howells of St Davids

My Lords, I am grateful to be allowed to speak in the gap. I shall use my two minutes to bring to the notice of noble Lords the excellent report of the King's Fund, published in July 2002, which my community calls "social care fighting spirit". The report calls for psycho-social support to be made available for people with terminal illnesses—something that is badly needed by sufferers of MND.

Julia Neuberger, the King's Fund chief executive, said that people with terminal illnesses need more than medication. MND is certainly one of them. She also claimed that support was patchy at best. The report called upon primary care trusts to use their new health community powers to fill gaps in services. It asks for the greater use of district and community nurses to provide palliative care at home; the pooling of resources across PCTs with social services and, above all, a greater commitment from government to fund care for people with a range of conditions, including motor neurone disease.

Can the Minister say whether this simple recommendation of the report is being acted upon and how successful it has been? If it has not been acted upon, why not?

8.25 p.m.

Baroness Barker

My Lords, I, too, thank the noble Baroness, Lady Noakes, for this welcome opportunity to turn the spotlight on a particularly devastating condition. The noble Baroness, Lady Noakes, used the word "vicious"; a word commensurate with the condition. It is an honour to take part in such a tightly focused and high quality debate. It is the sign of a good brief that those of us who have the joy of speaking near the end have large holes in our speeches. I pay tribute to the MND Association for the quality of its briefing.

I want to pick up on one or two issues. Some have been mentioned but others have not. As the noble Baroness, Lady Noakes, said in her eloquent introduction, we are talking about a range of similar conditions. Amyotrophic lateral sclerosis, as it is known in the United States, is the condition that we have primarily spoken about, but there are similar, rarer conditions such as progressive muscular atrophy and progressive bulbar palsy.

I believe that the most interesting and perplexing of findings from epidemiological studies is that race, diet and lifestyle are not determining factors in the condition. Furthermore, there is no evidence that MND is infectious or caused by any other condition; there is no difference in incidence rates in rural and urban areas; the average age of onset is 50; and the male to female ratio is 1.4:1.

Diagnosis is the area on which many of us have rightly focused. Diagnosis is primarily carried out by a consultant neurologist using blood tests, EMGs to measure nerve conduction velocity and MRI scans of the brain and/or the spine. The only treatment currently known to slow down the symptoms for a period of three to six months is Riluzole. While there are hopes that studies into the effect of creatine, a naturally occurring substance in the brain and muscle, may have a positive effect, nothing has yet come to light.

The condition is surrounded by mystery and myths. As the noble Baroness, Lady Finlay, said, there is a widespread belief that MND sufferers die by choking, yet the incidence of that is very small. It is not a muscle-wasting condition, as other noble Lords have said. Furthermore, the absence of a known cause and the search for greater understanding has led to a search for causal incidence. Recent examples of that include the Football Association's investigations into the disproportionately high levels of the condition among professional footballers in the UK and Italy. The legendary Celtic winger, Jimmy Johnstone—I can see him now jinking down the pitch—has the disease, and Don Revie died from it. I am pleased to see that the FA is willing to entertain examining the problem. It may result in nothing, but it is willing to look into the possible correlation to head trauma.

Another statistical incidence is rather better known; that is, the incidence of MND among Gulf War veterans. An epidemiological study in the US carried out by Duke University Hospital and the VA Hospital in Durham, North Carolina, found that the incidence of MND amongst soldiers deployed in that conflict was 6.7 per million, while the incidence of soldiers not deployed in that conflict was 3.5 per million. In this country to date only four Gulf War veterans have died from MND. That is a very low incidence.

However, from answers given by Ministers in another place, my understanding is that the MoD registers MND only when someone dies. Will the department track those who have been diagnosed because the incidence may be higher, and will there be a longitudinal study of the health of Armed Forces personnel who have taken part in the war in Iraq?

As the noble Baroness, Lady Noakes, and other speakers said, the average time for a diagnosis is 17 months and thereafter life expectancy is 14 months. That is a very long time to discover that you do not have much time. It is a source of understandable anguish for people with the disease and those who love and care for them. There seem to be a number of reasons for that and we have focused on the main one tonight; that is, the lack of consultant neurologists. I shall not rehearse the figures which other speakers have mentioned.

On 13th March this year in another place in response to a Question from my honourable friend Mr Mike Hancock, the Secretary of State stated that the Government's intention was that by 2004 there should be an additional 78 consultant neurologists. He went on to say that central government funding will be made available for 10 specialist registrar posts in neurology. He followed that up by saying that trusts will have the opportunity to create up to 20 locally-funded specialist registrar training opportunities. I have two questions. How will those 10 centrally-funded posts be distributed and what does a local opportunity to fund a specialist registrar training opportunity mean?

I also want to make a point, which has been made by other organisations working in related fields about consultant neurologists. Organisations working in the field of epilepsy—a subject in which I take an interest—have pointed out to Ministers and Members of this House that consultant neurologists are not always acquainted with particular conditions. The epilepsy organisations pointed out to us a recent case of significant misdiagnosis by a consultant neurologist who was not a paediatric epilepsy specialist. That applies to the other conditions, which are all generally lumped together under the heading of neurology. Therefore, I want to ask the Minister what can be done in the training of neurologists in the particular conditions which fall within that heading.

I, too, want to talk briefly about the national service framework. It is not our job to second-guess the work of that reference group, but there are two questions I want to ask. First, as has been alluded to by the noble Baronesses, Lady Finlay and Lady Oppenheim-Barnes, how will it be possible within the current set-up of the National Health Service to ensure that in a designated region—I ask what size the region should be—there is a system in which there is a consultant neurologist who is responsible within a unit for training and support to all the other staff—general staff, GPs, community nurses, CPNs and psychiatrists—for dissemination of training and experience in this subject? The same applies to some of the other long term conditions. I do not know whether it should be at the level of the strategic health authority. I believe it is the key question that could be answered in the national service framework.

Secondly, I am not a doctor and make no claims in that respect. However, given the nature of this disease in which some neuro-muscular functions fail but others such as bladder control do not, and given that there is no sensory impairment associated with MND, it seems to be a condition in which there should be a high probability of a breakthrough at some point for the discovery of a cause, whether chemical, genetic or physiological. Therefore, is there a case for the Government to invest in two or three centres of excellence pursuing slightly different approaches to the condition?

As the noble Baroness, Lady Finlay, and the noble Lord, Lord Mackenzie of Culkein, have said, people diagnosed with MND face a devastating future. For some people, complementary therapies, such as specialist massage or acupuncture, may benefit by prolonging mobility or in pain management. I want to make clear that I make no claim whatever for complementary therapies as any form of cure, but I merely make a case for them as a means which may be effective for some people in prolonging quality of life and pain management. If that is so, above all else, these people deserve rapid access to that treatment and they deserve it as part of the National Health Service. For some people it may be cost-effective by allowing them to continue to work for longer than they may have done. Therefore, it is an issue worth following up.

Finally, I, too, pay tribute to the work of the MND Association. It provides calm, balanced information and support of the highest quality and integrity to people who have the disease and to the people who love and care for them. The association has built a good foundation for the work of the specialist group working on the national service framework. I hope that the Government will continue to support its efforts directly. In that way, surely hope must lie and if we can achieve anything we can achieve hope.

8.37 p.m.

Baroness Andrews

My Lords, I am extremely grateful to the noble Baroness, Lady Noakes, for the opportunity to have such an important, eloquent and heartfelt debate on such an important topic. She introduced it in such a powerful and compassionate way with a splendid speech. Although I do not have the MNDA brief, it is a privilege to reply.

In all probability, I shall take a little longer than my allotted 15 minutes. I hope that I can assure noble Lords that we intend to bring both hope and, equally important, action on what—I agree with the noble Baroness—is not a satisfactory situation. There is much that needs improving. There is much that needs extra attention and clear thinking. I hope that I can indicate that we are very much aware of what needs to be done and are trying to do it.

It has been an expert and moving debate. There is nothing that I could say to improve on the experience that has been set out in terms of the effect that this horrible disease has on individuals. The terms describing the disease—cruel, relentless, violent—in themselves probably are not sufficient to indicate what the actual impact is, both on the individual and the carer.

The issue that we are struggling with, both in professional terms and in terms of providing care, is the problem of the difficulty of diagnosis, to which so many noble Lords have referred. Would that we could look forward to the type of scientific breakthroughs seen in some other fields. In time, I hope that they will come. But diagnosis is hugely complex. Probably, we must agree that neurology has not been a very fashionable or popular speciality over the years. That is something we want to change and address. One of the reasons that the NSF holds out some possibilities is to raise the profile and to make people understand how important a speciality this is. There has been incredibly rapid progress in recent years in brain surgery which makes it a more attractive proposition for young and intelligent researchers and surgeons.

Unfortunately, diagnosis is difficult and often slow. As the noble Baroness said, an ordinary GP may see very few cases during the course of his or her lifetime. Every speaker has referred to the difficulties caused by unacceptably long waits. I will not rehearse the things that the Government are doing to try to reduce waiting times overall. I am sure that noble Lords are very familiar with what we are doing and the fact that we are on target for this year and, I hope, next year as well. Certainly we are aware of the pressures on neurological specialists in the work place and because of the difficulties resulting from there not being enough of them. We have increased the number in recent years, but it is from a low base.

The noble Baroness, Lady Barker, took the wind out of my sails somewhat by quoting all the figures that I was going to quote. In fact, our best projections are that by March 2004 an extra 80 neurologists will be in place as well as additional registrars. I will have to write to her about how we are approaching local funding and distribution because these are technical workforce planning issues. The long-term conditions workforce, which includes neurologists, is looking at neurology in the context of its general work. It will be looking not just at the clinicians and registrars but at all the tasks and roles that are performed. So work is being done in that respect.

I join noble Lords in paying tribute to the part played by the MND Association. I am delighted that representatives from the association are with us this evening. I know that they had a recent meeting with my honourable friend in another place, Jacqui Smith. I hope that they understand that we are deeply mindful of their continuing contribution and their invaluable support for people with MND. We have an open door and are anxious to listen closely to their expertise. It is irreplaceable and very valuable. The resource of £7 million that I understand has been made available is very significant. The NHS has a lot to learn from the way in which the association works and I hope that it will do so over the next three years. The recent paper No Time to Lose, which was submitted to the team preparing the NSF, outlined the case for improved access and better co-ordinated services.

I will speak briefly about the two clinical interventions to which the noble Baroness, Lady Noakes, referred. I shall not try to pronounce them—it is too risky. I shall simply refer to them as PEG and RIG. PEG is the feeding technology; I can reaffirm that the National Institute for Clinical Excellence has been asked to develop a clinical guideline which includes the use of nutritional supplements. The MNDA is registered as the stakeholder; we are hopeful that that will make a significant difference to access and quality of treatment. We are expecting that around October 2004.

With regard to non-invasive positive pressure ventilation, to which the noble Baroness, Lady Finlay, also referred, we have made progress to improve care for people who are seriously ill and have breathing problems. The NHS Modernisation Agency is kicking in at different stages of the situation that we face with MND, and I will refer to it several times. It has identified improvements in its critical care programme.

Last July, the report Weaning and Long Term Ventilation on how the new technology could help, was produced by a critical care working group, part of the agency's service improvement team. It looked at patients with serious breathing problems and identified many ways in which patient care could be improved. It recommended that an NIPPV service be established in each acute trust for the management of patients with acute respiratory failure. That obviously includes people other than MND patients. It is a very significant contribution to the modernisation of the critical care service in this respect. We fully expect and want to see that that will bring about an improvement in both the distribution of the technology and the quality of life of patients with MND.

The noble Baroness also referred to riluzole. Following NICE guidance, the drug has been easier to obtain. The additional months of life that it can bring make it a very important and worthwhile development.

I want to spend some time on the issue of coordination, on which the noble Baroness, Lady Finlay, was right to focus. It is too bland a term for what we want it to mean, which is the proper delivery of all the services, whether speech and language therapy, nutritional advice and diet, or supervision of the wheelchair, which should not happen nine months too late but on time. The challenge is to remove the obstacles.

If one was to ask an MND patient or nurse what they thought were the key elements of a good patient pathway, they would give the following list: informed GPs, who can speed up the referral process; a full assessment of needs, so that patients are not constantly having to return to say that something else has happened; the fullest possible information for patient and family at different stages; the link with a multidisciplinary team—a robust and single link; a single point of contact for navigation; regular reviews as the disease progresses so that patients or nurses can plan ahead for unpredictability; proper palliative care, hopefully in the home when it is needed; and respite care breaks in hospitals.

I want to be able to show that some of those elements are in place, because we are not waiting for the NSF. I take the point that it has taken time to set it up; it is complicated because it deals with so many different elements of different conditions. However, we have to tackle the issue of co-ordination, which is so essential with a disease of this nature, which progresses so fast and has such terrible implications for carers and the whole family. We are working hard to do what we can.

The noble Baroness, Lady Finlay, will know that we have freed up the systems for the health service partnership arrangements. They have been available since April 2000. I was delighted to hear about the case study in Merton and Sutton mentioned by my noble friend Lord MacKenzie of Culkein. Clearly, some excellent work is taking place in parts of the country. It would be nice to be able to bring it all together so that we can generalise that good practice. However, we have some new powers and opportunities pooled by joint strategies for joint teams, and a new and more intelligent way of making things happen on the ground. The new PCTs, with intelligent and broad conditioning, can make a difference.

Some 190 joint working partnerships have been set up. They are different models—as MND is a different model. We want to maximise those models, so that they help people who present specific and different sorts of challenges to the health service because of the rapid response needed. We have not seen M N Ds in the new 190 working partnerships, but I hope that MNDA will be able to show us how they might become more effective.

Joint working is essential if we are to ensure independence at home in comfort as long as possible. There are many good examples. Sutton and Merton has been referred to; King's College Hospital is another example, as is the Hope Hospital in Manchester, where excellent work is happening inside and outside the hospital. We would obviously like that sort of practice to be introduced elsewhere. MNDA also has a number of regional care advisers working with local services, who train, manage and support association visitors. That shows the difference that a single person could make. It is a model that we would like local health care providers to consider when they develop such services.

I shall refer to two services that are in urgent need of modernisation and which we have done something about. One is the wheelchair service and the other is community equipment, to which several noble Lords referred. We must admit that the supply of wheelchairs has been a source of genuine grievance and a genuine Cinderella service. We are pleased that, driven by the modernisation agency, the 45 wheelchair services have come together to form a collaborative. That is specifically there to redesign the services, to identify when people will need help, how they are going to get it and to close the gap between supply and demand. The programme of work of the collaborative will be made available from this autumn. That will mean a better service.

In relation to the provision of community equipment, I remind noble Lords that we have invested an extra £105 million into the NHS for the three years from 2001–2. A national integration of community equipment services support teams was launched in November 2001 with the aim of helping councils and organisations to meet the relevant targets, which are important. All community equipment services will be integrated across health and social services by 2004. Meeting that target means that 50 per cent more people will benefit from community equipment services by 2004. However, in relation to MND patients, we expect all equipment to be delivered within seven working days. We must speed things up, and integration and new resources must do that.

We are also considering better strategies. From later this year, the modernisation agency team will be developing a programme to improve access to neurology services as a whole. It will do that by examining referrals, waiting times, capacity and demand, choice and treatment and how to redesign services and develop clinical networks. We must see and treat more quickly and coherently.

The noble Baroness, Lady Barker, raised interesting questions about the distribution of neurologists. I expect that that agency team will examine, for example, the proper use of neurologists and how they employ their time. We also have the new booking system, which means that patients now say when they can turn up for an appointment at their convenience, not that of the institution. We are already seeing that that means that there are fewer cancellations. Contextual strategies are helping in that regard. Specialist GPs are also being developed. Some of those GPs in certain areas may choose a neurological specialty, not least, as I said, because such interesting work is going on.

Many noble Lords rightly discussed carers. This must involve the most intense, exhausting and emotionally draining form of care that one could imagine. We have expanded investment in respite care, which will make a difference. We are expecting 130,000 new opportunities for respite care. It is important that that is properly delivered on the ground, and funding is going into that.

I turn to direct payments. We need to build in flexibility and choice for the carer. Direct payment means, for example, that a mobile phone will allow for peace of mind if one must, for example, leave the home to go shopping. One can essentially buy in the right sort of care—a personal sort of care. That also helps one to bring in more district nurses to supply the sort of advice and support that teaches one how to use feeding and ventilation systems. That is crucial and we hope that it will be developed.

We have put an additional £50 million into palliative care. One way to ensure that that aid is properly driven is by setting up the palliative care partnership. Clearly, part of the challenge is to ensure that that palliative care is available on the basis of choice.

The noble Baroness, Lady Barker, asked about aromatherapy. We have just announced a research programme into aromatherapy to the value of £1.3 million. I am fully aware that some aromatherapy services are so therapeutic that they can be more effective in some ways than conventional medicine—I refer, for example, to massage for aching limbs. However, that must be the judgment of the clinical team on the ground. I feel positive about that.

I turn to the NSF and return to the patient pathway and what else can be done. We must recognise that the NSF represents a very important opportunity. It is driven by expertise and based on evidence. It must be real and practical as well as visionary. To respond to the noble Baroness, Lady Oppenheim-Barnes, one of its most important tasks is to raise our knowledge of and understanding about the disease and the importance that we attach to dealing with it. The NSF is the right location for our future planning for MND. To respond to the question of the noble Baroness, Lady Noakes, it will deal with all patients of all ages in relation to MND. It aims to set general standards that will improve the quality and treatment for all.

I am delighted that the MNDA is involved in the external reference groups in different ways. I understand that it is actively involved in providing advice and contributions. In considering the pathway, working groups are now looking at the health and social care needs of users, transitional issues between services, information to support the needs of users, and, how we can learn from the lessons. In fact, the pathway that I set out as the preferred patient pathway is precisely the kind of thing that the NSF must look at, apply and develop.

The common themes must be rapid referral, information, holistic care, flexible/seamless provision, easy access, co-ordination between the different roles, providing the support that the family wants, recognising complexity and multiple conditions and preparing for them.

So we are very keen that the NSF should bring improved and better services for patients. Its publication is planned for 2004. It is a 10-year programme. I know it feels a long time to wait. We have to be as intelligent and as far-sighted as we can. Sometimes these matters just take time. At the moment the NSF will be supported with a delivery strategy that will look at workforce aspects. So these changes are about practical delivery on the ground.

In conclusion, I shall write to the noble Baroness, Lady Barker, on her question regarding the syndrome in relation to disorders in different situations. I hope that noble Lords will agree that we take this condition very seriously and are anxious to make improvements and changes.

The noble Baroness, Lady Finlay, said that MND patients had much living to do. That is an extremely powerful statement. If that were taken as the slogan for the NSF in this respect we could certainly guarantee that there would be better outcomes. Certainly, I am confident that the initiatives that I have outlined for the interim, as well as for the long-term, will make a very important and necessary difference.